Site to raise awareness for Charcot Marie Tooth. Discuss my quest to run the Boston Marathon while having CMT. Talk about training and doing marathons, half marathons, triathalons and duathalons. Discuss being an athlete with a disability.

Follow by Email

Monday, February 29, 2016

February 29th has been designated by the National Organization for Rare Diseases (NORD) as as Rare Disease Day. Governor Walker of Wisconsin signed a proclamation.

A disease is considered rare if it affects less than 200,000 Americans. CMT qualifies because about 160,000 Americans are estimated to have CMT.

It is surprising how many Americans are affected by rare conditions. One in 10 Americans has a rare disease. Over 600,00 in my State of Wisconsin are affected.

To mark the day Wisconsin NORD sponsored a gathering at the State Capitol in Madison. Allison Moore of the Hereditary Neuropathy Foundation asked me to represent the CMT community.

I made contact with the organizer Dr. Sheldon Garrison and he asked me to speak to talk about Team CMT. I think I was asked to speak because of Team CMT, my book and website. Some in the CMT community have found my efforts to be self promotion. I do them because they give me a chance to raise awareness and educate about CMT.

I also knew that we would have a chance to petition State lawmakers who would be present at the meeting.

I asked the CMT community on Facebook what they would say to the group if they had a chance. Just a few of the issues mentioned included:

Money for CMT research

Making clinic offices compliant with ADA requirements. If a patient is in a wheelchair they may not be able to get an exam. If a wheel chair is not able to be raised, a patient may not be able to reach the exam table. Practices are supposed to have them, but many do not.

Educate elementary and middle school teachers on the basics of CMT. In many CMT starts in childhood. Teachers could alert parents about potential CMT. At the very least accommodations could be made for a CMT affected student.

Since September is CMT awareness month, please issue a proclamation in the state of Wisconsin.

I talked about all of these issues and how important it is to raise awareness of CMT and to get an accurate diagnosis.

A representative from my State Senator was at the meeting so I plan on reaching out to him to follow up on some of our issues.

There was some great research on gene therapies presented by Dr Michael Lawlor of Children's Hospital. There have been some real breakthroughs for muscle diseases.

The most moving part of the day were the patient stories. There was a father of a boy with Sanfilippo Syndrome. Sanfilippo is a progressive disease where the patient loses physical and cognitive ability. The disease started around 2 years old and his son now 8 years old has lost the ability to speak. He will continue to decline and will die before he reaches age 20.

There was a mom of two boys with PKU, They have a condition that does not allow them to digest protein. They can eat fruit and some vegetables. If they eat anything else it damages the body including sever damage to the brain.

It really puts CMT into perspective. We have challenges but it does not affect our cognitive ability or our mortality.

It was a really good day and I made some good contacts that I will use to help raise awareness. I can't wait to go back next year. Sorry there are not pictures, I brought my nice along to take pictures and she was so busy listening to my talk she forgot to take pictures.

*********************

Chris
Wodke

Founder
& Manager Team CMT

www.run4cmt.com

Chris is
a triathlete and long distance runner. She is a three time participant of the
Boston Marathon. In 2012 she finished 2nd
at Boston in
the Mobility Impaired Division. She was on the course in 2013 when the bombs
exploded.

She has
appeared three times at the Paratriathlon National Triathlon Sprint
Championship. She was the 2012 and 2014 National Champion Paratriathlon Open
Division Champion.

In 2014 she was the PC Open Champion at the Duathlon National Championship. She
has qualified to represent Team USA
at the Aquathon ITU World Championship in Chicago
in 2015.

In 2014 she represented the U.S.
as a paratriathlete at the Pan-American Triathlon Championship in Dallas, Texas.

She
travels around the country raising awareness of CMT.

She is
the author of the book, “Running for My Life” that details her experience as a
CMT affected athlete.

Team CMT
is a group of athletes and supporters working to raise awareness and to find a cure
for CMT. We have 176 members in 31 states. We also have members in Australia, England,Scotland, Canada,
Vietnam, Turkey, Finland,
Scotland, France and Iran. If you wish to join us visit
our web site; www.run4cmt.com or www.hnf-cure.org

CMT or
Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It
affects over 155,000 Americans (as many as MS). It is a disease of the
nerves that control the muscles. It is slowly progressive, causing loss of
normal function and or sensation in the lower legs/feet and arms/hands.

Symptoms
include; muscle wasting in the lower legs and feet leading to foot drop, poor
balance and gait problems Atrophy in the hands causes difficulty with manual
dexterity.

Structural
foot deformities such as high arches and hammer toes are common.

Poor tolerance
for cool or cold temperatures and many people have chronically cold hands and
feet.

CMT and running, CMT and
triathlon, CMT and athlete, Charcot-Marie-Tooth and running,
Charcot-Marie-Tooth and triathlon, Team USA and Team CMT, Running for my
life-Winning for CMT, CMT athlete, athlete and CMT, triathlete and CMT, Boston
Marathon Bombing

Saturday, February 27, 2016

"Yo were not born a winner and you were not born a loser. You are what you make yourself. " -Lou Holt

This is the 3rd year I participated in the Winter Wonderland Triathlon in Verona, Wisconsin. It's a sprint triathlon with a 750 meter pool swim, a 12 mile computrainer bike ride and an outdoor 5K run.

The event is a qualifier for USA triathlon's Age Group National Championship in Omaha in August. It is also a qualifier for Collegiate Nationals. So over two days both college and age group athletes participate in this race.

When I looked at the start list I was listed as a PC or physically challenged athlete. When I checked in the race director knew my name. The race director listed me as PC because he knew I had raced PC in the past. I never thought anyone noticed me. I asked to be switched to an age group athlete to try and qualify for the national championship. There was only one other woman in my age group.

The race did not start out well when I could not fall asleep the night before the race. I don't know why that happens. The race is really low key and I was not feeling stressed. If anything stops me from doing races it will not be my CMT, it will be my inability to sleep before most races.

I think I was afraid of over-sleeping because I had to be at race check-in at 6 am.

The swim heats were by gender and age group. I chatted with one Chris one of my triathlon friends and with some of the other ladies in my heat. The race started well. I kept up with the woman in the lane next to me until the last lap. She got me by about 1/2 a lap. My friend Chris said she was lapped by the woman in the lane next to her. I was the last racer out of the pool. swim time of 19:03

Next up was the bike race. I have not done much biking since my last race in November. I have been working out, but only biking about once a week. So I knew my bike would not be great. I felt tired, no surprise from the lack of sleep. My legs were dead. I finished last of all the racers at 42:47.

The run was done by heats, so the seven women in my heat walked out to the start. It seemed far away and would have been nice if that had counted toward our race mileage. It was two loops in a park on a pretty flat course. I had flat courses because then I know how far behind I am. I was over a 1/4 mile behind the next slowest runner. As I hit every turn around I smiled and told the volunteers someone has to be last. I started to feel a bit sorry for myself and then I remembers all the people that would love the chance to be able to run. I think of everyone I run for with CMT that is not blessed to be able to do what I can do. So I remembered that as I crossed the finish line last. The volunteers were all so nice and encouraging. I finished the 5K in 31:11 a decent time for me. Again I was dead last.

I looked at the race results and I was absolutely last of all the racers. The last two years I finished ahead of many of the college students and even some of the age group athletes. Because age group nationals is not in Milwaukee this year the race was much smaller and the athletes much more hard core and more talented.

My over all time was 1 hr 33:01. Slower by quite a bit over the last two years, but still fast enough to qualify for Para-triathlon Nationals.

So this race was a good warm-up for the season. I start training this week for my 1/2 IM Aquabike in June (1.2 mile swim, 56 mile bike). The real work really begins.

I may have been last, but I had fun, met some nice people, had a good workout and raised some awareness for CMT.

*************************

Chris
Wodke

Founder
& Manager Team CMT

www.run4cmt.com

Chris is
a triathlete and long distance runner. She is a three time participant of the
Boston Marathon. In 2012 she finished 2nd
at Boston in
the Mobility Impaired Division. She was on the course in 2013 when the bombs
exploded.

She has
appeared three times at the Paratriathlon National Triathlon Sprint
Championship. She was the 2012 and 2014 National Champion Paratriathlon Open
Division Champion.

In 2014 she was the PC Open Champion at the Duathlon National Championship. She
has qualified to represent Team USA
at the Aquathon ITU World Championship in Chicago
in 2015.

In 2014 she represented the U.S.
as a paratriathlete at the Pan-American Triathlon Championship in Dallas, Texas.

She
travels around the country raising awareness of CMT.

She is
the author of the book, “Running for My Life” that details her experience as a
CMT affected athlete.

Team CMT
is a group of athletes and supporters working to raise awareness and to find a cure
for CMT. We have 1756 members in 31 states. We also have members in Australia, England,Scotland, Canada,
Vietnam, Turkey, Finland,
Scotland, France and Iran. If you wish to join us visit
our web site; www.run4cmt.com or www.hnf-cure.org

CMT or
Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It
affects over 155,000 Americans (as many as MS). It is a disease of the
nerves that control the muscles. It is slowly progressive, causing loss of
normal function and or sensation in the lower legs/feet and arms/hands.

Symptoms
include; muscle wasting in the lower legs and feet leading to foot drop, poor
balance and gait problems Atrophy in the hands causes difficulty with manual
dexterity.

Structural
foot deformities such as high arches and hammer toes are common.

Poor
tolerance for cool or cold temperatures and many people have chronically cold
hands and feet.

CMT and running, CMT and
triathlon, CMT and athlete, Charcot-Marie-Tooth and running,
Charcot-Marie-Tooth and triathlon, Team USA and Team CMT, Running for my
life-Winning for CMT, CMT athlete, athlete and CMT, triathlete and CMT, Boston
Marathon Bombing

Wednesday, February 24, 2016

In an emotional and heartwarming true story by author Christine Wodke, Running for My Life: Winning for CMT follows the tremendous journey undertaken by the author as she trains for and then participates in marathons and triathlons, all the while dealing with Charcot-Marie-Tooth Disorder. Readers will experience all of the difficulties and challenges that Christine herself faces every day while training, the grueling effect that her passion has on her body, and will feel the tremendous joy and satisfaction that she has as she finishes her goal races. Author Christine Wodke can serve as an almost heroic ambassador for Charcot-Marie-Tooth Disorder, the "biggest disease that no one has heard of," and her book serves as a testimony that people can overcome difficulties and carry out their dreams, no matter what their circumstances.

I very much enjoyed Running for My Life: Winning for CMT. Author Christine Wodke has done a wonderful job in writing a story that her readers will be able to connect with, even if they had previously been unfamiliar with CMT. All people have their own challenges in life, and many let those challenges get in the way of what they truly want. Author Wodke serves as an example of a person who has fought through her challenges to achieve a great deal, and her story is a shining beacon of hope for others. I highly recommend this book to any reader looking for an inspirational true story. I certainly hope that author Christine Wodke will continue to share her journey and that we might see another book from her in the future. I, for one, would certainly love to read it!

Many important decisions related to rare diseases are made at the state level, including newborn screening; support servicesto help families cope with complex medical needs; an environment that promotes innovative medical research and product development; and insurance practices that assure patientaccess tomedically-necessary therapies. The implementation of the Affordable Care Act has highlighted the increasingly important role of state policies and programs in assuring that the healthcare needs of Americans are addressed.

The event will be held in the Assembly Parlor of the WI Capitol building.

9:30 - 10:30AM: Coffee and Social

10:30AM – Noon: Event and presentations

The event is organized by patient advocates who have joined with the National Organization for Rare Disorders (NORD)®, a leading independent, non-profit organization committed to the identification, treatment, and cure of rare diseases, and national sponsor of Rare Disease Day in the U.S., to educate and inform the public,elected officials, legislative staff and the media.

According to the National Institutes of Health (NIH), a disease is rare if it affects fewer than 200,000 Americans. One in 10 Americans live with a rare disease—affecting 30 million people—and two-thirds of these patients are children. There are more than 7,000 rare diseases and onlyapproximately 450 FDA-approved medical treatments. Medical researchers are not studying many diseases due to limited financial resources, and therefore, this research isoften funded by patient families or by patient advocacy groups.

Rare Disease Day is an annual awareness day celebrated around the world dedicated to elevating public understanding of rare diseases and calling attention to the special challenges faced by patients..

Chris is
a triathlete and long distance runner. She is a three time participant of the
Boston Marathon. In 2012 she finished 2nd
at Boston in
the Mobility Impaired Division. She was on the course in 2013 when the bombs
exploded.

She has
appeared three times at the Paratriathlon National Triathlon Sprint
Championship. She was the 2012 and 2014 National Champion Paratriathlon Open
Division Champion.

In 2014 she was the PC Open Champion at the Duathlon National Championship. She
has qualified to represent Team USA
at the Aquathon ITU World Championship in Chicago
in 2015.

In 2014 she represented the U.S.
as a paratriathlete at the Pan-American Triathlon Championship in Dallas, Texas.

She
travels around the country raising awareness of CMT.

She is
the author of the book, “Running for My Life” that details her experience as a
CMT affected athlete.

Team CMT
is a group of athletes and supporters working to raise awareness and to find a cure
for CMT. We have 1756 members in 31 states. We also have members in Australia, England,Scotland, Canada,
Vietnam, Turkey, Finland,
Scotland, France and Iran. If you wish to join us visit
our web site; www.run4cmt.com or www.hnf-cure.org

CMT or
Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It
affects over 155,000 Americans (as many as MS). It is a disease of the
nerves that control the muscles. It is slowly progressive, causing loss of
normal function and or sensation in the lower legs/feet and arms/hands.

Symptoms
include; muscle wasting in the lower legs and feet leading to foot drop, poor
balance and gait problems Atrophy in the hands causes difficulty with manual
dexterity.

Structural
foot deformities such as high arches and hammer toes are common.

Poor
tolerance for cool or cold temperatures and many people have chronically cold
hands and feet.

CMT and running, CMT and
triathlon, CMT and athlete, Charcot-Marie-Tooth and running,
Charcot-Marie-Tooth and triathlon, Team USA and Team CMT, Running for my
life-Winning for CMT, CMT athlete, athlete and CMT, triathlete and CMT, Boston
Marathon Bombing

Tuesday, February 16, 2016

"Do not spoil what you have by desiring what you have not; but remember that what you have now was one among the things only hoped for." - Epicurus

My racing schedule is going to look a little bit different this year. I am doing more races near home and a lot less traveling. For the first time in four years I have no plans to go to the Para-triathlon National Championship. I am going to pass on it this year.

After doing three national championships this year, I only have one national race on my schedule. It will be nice to do some traveling for a change that has nothing to do with a race. I will travel to Cozumel in September as part of Team USA for the ITU Aquathlon World Championship race and I will travel to Miami in November for the national championship for either long course triathlon or aqua bike. If my legs hold up then I will do the long course race.

I really enjoyed my taste of bike racing the last two years and plan on adding more of those events to my schedule. I also purchased a mountain bike in the off season and will be doing an off road triathlon for the first time. Doing new events keeps things interesting and keeps me motivated to work out.

2016 Competition Schedule

February 14 Winter
Trail Assail, Nashotah (5 K ski, 5 K snowshoe)

February 21 Verona Triathlon, Sprint Triathlon

May 1 J
Hawk Early Bird Triathlon, Olympic Triathlon

May 8 Time
Trial bike race, 20 K BongState Park,
Kansasville

June 5 LakeMills
Triathlon, Sprint

June 19 High
Cliff Aquabike, 1.2 mile swim, 56 K bike

June 25 Xterra
Off Road Triathlon, Sprint, Sheboygan

July 10 Pewaukee
Tri, Sprint –WisSeniorGamesState
Championship

July 31st Tri-ing
for Children, Olympic Triathlon

August 21 State
Time Trail Championship, 40 K, Kansasville

September 6 Wisconsin Senior Games Cycling State Championships

September 10 Wisconsin Senior Games, Tosa Fest 5K running race

September 14 Aquathlon
World Championship, Cozumel

September 17th Devil’s
Off-Road Challenge, DevilsLake

November 13 National
Championship Long Course Triathlon or Aquabike, Miami

Tentative Races

My first race was already cancelled due to warm weather and lack of snow cover.

So my first race will be an indoor event near Madison Wisconsin. It is a qualifying event for Age Group National Triathlon Championship in Omaha. If it goes well I will add that race and who know what else might come up to tempt me.

Last year had its disappointments. I saw the end of my competing at the elite para level when I was turned down for classification by the ITU for the second time. I cannot be assessed again unless the system changes or my condition progresses.

There is still a lot for me in sports. I never that I would be competing at a world championship. That is nothing that was ever something I considered to be possible, yet I am on my way to Cozumel.

I am really looking forward to the 2016 season. I will continue to represent Team CMT, just a bit closer to home this year.

**********************

Chris
Wodke

Founder
& Manager Team CMT

www.run4cmt.com

Chris is
a triathlete and long distance runner. She is a three time participant of the
Boston Marathon. In 2012 she finished 2nd
at Boston in
the Mobility Impaired Division. She was on the course in 2013 when the bombs
exploded.

She has
appeared three times at the Paratriathlon National Triathlon Sprint
Championship. She was the 2012 and 2014 National Champion Paratriathlon Open
Division Champion.

In 2014 she was the PC Open Champion at the Duathlon National Championship. She
has qualified to represent Team USA
at the Aquathon ITU World Championship in Chicago
in 2015.

In 2014 she represented the U.S.
as a paratriathlete at the Pan-American Triathlon Championship in Dallas, Texas.

She
travels around the country raising awareness of CMT.

She is
the author of the book, “Running for My Life” that details her experience as a
CMT affected athlete.

Team CMT
is a group of athletes and supporters working to raise awareness and to find a cure
for CMT. We have 1756 members in 31 states. We also have members in Australia, England,Scotland, Canada,
Vietnam, Turkey, Finland,
Scotland, France and Iran. If you wish to join us visit
our web site; www.run4cmt.com or www.hnf-cure.org

CMT or
Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It
affects over 155,000 Americans (as many as MS). It is a disease of the
nerves that control the muscles. It is slowly progressive, causing loss of
normal function and or sensation in the lower legs/feet and arms/hands.

Symptoms
include; muscle wasting in the lower legs and feet leading to foot drop, poor
balance and gait problems Atrophy in the hands causes difficulty with manual
dexterity.

Structural
foot deformities such as high arches and hammer toes are common.

Poor
tolerance for cool or cold temperatures and many people have chronically cold
hands and feet.

CMT and running, CMT and
triathlon, CMT and athlete, Charcot-Marie-Tooth and running,
Charcot-Marie-Tooth and triathlon, Team USA and Team CMT, Running for my
life-Winning for CMT, CMT athlete, athlete and CMT, triathlete and CMT, Boston
Marathon Bombing

Sunday, February 14, 2016

This soup is not a health food. It falls firmly into the comfort food category. I learned to make it from my mom who learned it from my grandma. The branch of the family that devised this recipe were the same people that used to spread goose grease on their bread instead of butter. They all lived to ripe old ages.
My aunt, grandma and mom cooked this soup often. I remember my cousin Cheri and I standing over a pot of this soup at her house, putting in the dumplings. Years ago I had my mom teach me how to make it.
My grandma's family were peasants from Slovakia and I think this soup is adapted from another they used to make that had just water in place of the tomato juice. They were really poor.

They had a farm here in the States and maybe they had extra tomatoes from the garden. My mom used to make this soup with fresh tomato juice and it has a totally different taste.

Anyway this is the ultimate comfort food for me. I make it when I feel like I am getting a cold or just on a day when I am feeling a little down. This is the first time this recipe has been put to paper in my family so some of the amounts are guessing. I know how my mom talk me to do it, but I've done my best to capture it here.

Put bacon grease into soup pot. Melt and begin to brown the grease. Add the flour and stir to make a roux until dark brown. Add the tomato juice. Continue to heat until the mixture comes to a low boil. While waiting, combine the milk, flour and egg. Blend adding more milk if needed. The mixture should be thick enough to make dumplings. When the mixture comes to a boil, make the dumplings by taking a large spoonful of batter, Using a knife push a piece off of the spoon into the soup to make dumplings. The size can vary depending on how large you like them. Once all the dumplings are into the soup, turn the heat down to a simmer and cook for 5 minutes until the dumplings are cooked.

********

Chris
Wodke

Founder
& Manager Team CMT

www.run4cmt.com

Chris is
a triathlete and long distance runner. She is a three time participant of the
Boston Marathon. In 2012 she finished 2nd
at Boston in
the Mobility Impaired Division. She was on the course in 2013 when the bombs
exploded.

She has
appeared three times at the Paratriathlon National Triathlon Sprint
Championship. She was the 2012 and 2014 National Champion Paratriathlon Open
Division Champion.

In 2014 she was the PC Open Champion at the Duathlon National Championship. She
has qualified to represent Team USA
at the Aquathon ITU World Championship in Chicago
in 2015.

In 2014 she represented the U.S.
as a paratriathlete at the Pan-American Triathlon Championship in Dallas, Texas.

She
travels around the country raising awareness of CMT.

She is
the author of the book, “Running for My Life” that details her experience as a
CMT affected athlete.

Team CMT
is a group of athletes and supporters working to raise awareness and to find a cure
for CMT. We have 1756 members in 31 states. We also have members in Australia, England,Scotland, Canada,
Vietnam, Turkey, Finland,
Scotland, France and Iran. If you wish to join us visit
our web site; www.run4cmt.com or www.hnf-cure.org

CMT or
Charcot-Marie-Tooth is the most commonly inherited peripheral neuropathy. It
affects over 155,000 Americans (as many as MS). It is a disease of the
nerves that control the muscles. It is slowly progressive, causing loss of
normal function and or sensation in the lower legs/feet and arms/hands.

Symptoms
include; muscle wasting in the lower legs and feet leading to foot drop, poor
balance and gait problems Atrophy in the hands causes difficulty with manual
dexterity.

Structural
foot deformities such as high arches and hammer toes are common.

Poor
tolerance for cool or cold temperatures and many people have chronically cold
hands and feet.

CMT and running, CMT and
triathlon, CMT and athlete, Charcot-Marie-Tooth and running,
Charcot-Marie-Tooth and triathlon, Team USA and Team CMT, Running for my
life-Winning for CMT, CMT athlete, athlete and CMT, triathlete and CMT, Boston
Marathon Bombing